Notes on the times

The world has become more interconnected. It took just a few weeks for humanity to be humbled and housebound by the COVID19 pandemic. Everyone, everywhere feels exposed. But what does this mean for the already vulnerable people in societies globally who live with chronic health conditions, like epilepsy?

Today, 50 million people live with this misunderstood brain condition worldwide, which is characterised by repetitive seizures. It’s a health condition that claims 21 lives a week in the United Kingdom, with half of those deaths due to SUDEP (Sudden Unexpected Death in Epilepsy). There is little on the news and the epilepsy community fights for a voice on a daily basis worldwide in the face of extreme persecution, social isolation, stigmatisation, and fear.

Imagine having to rely on others for your own safety? Drawing parallels to these times, it’s clear that whether we like it not, now we are all relying on each other as humanity has been forced to bear witness to a simple truth: the health and wellbeing of all people and all communities, everywhere, is intertwined. And while it may seem like the world has become a little more dangerous, it has become even more fragile for people living with chronic health conditions, many of whom have complex needs. For years, communities representing at-risk health issues, like epilepsy, have battled to get attention and the spotlight they publicly deserve. In these times, maybe soon we will look through a new lens of understanding. Maybe this is a moment when we all realise that people, everywhere are connected. Whether it’s through the germs that attack all our bodies, or the electrical activity that fires in our brains. We all work the same way. Some people are just wired slightly differently and have more detailed needs.

Today, in this moment, everyone, everywhere, finally gets to feel the same thing at the same time, together: fear, vulnerability, uncertainty, mistrust of our own bodies, and the feeling of uncontrolled days ahead. Maybe these times will humble us all. Maybe health will become more important to us. Maybe in the face of all this chaos, we might find some calm.  

Notes on Epilepsy In The Times of COVID19 is a response by the
A Life Electric project.

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